New Haven Register (Sunday) (New Haven, CT)
Users: Contact woes plague alert app
CT COVID app is on 1M smartphones, but only 10K have used it
More than 1.15 million people have enabled the COVID Alert CT phone app. Only a tiny fraction of them have actually used it, and it’s unknown how many notifications have been sent, state records show.
Of that number, updated as of Feb. 7, only 10,545 COVID patients were successfully contacted by a contact tracer and given the codes necessary for the app to work.
Of that, 2,350 of those codes were used. Those 2,350 patients are the only people in Connecticut whose infection might result in an alert through the app.
There have been 185,614 COVID cases between Nov. 8, when the app first debuted,
and Feb. 7.
Many residents say they never received a notification, even though close friends and family were diagnosed with COVID-19.
“I was contact-traced pretty quickly after I tested positive,” said Preston Kingswood, of Mansfield. He was given a code at that time to input his information into the application, as is supposed to happen.
But, “then when I went to input it into the app, it did not work,” he said. “No one knew I had COVID and I had to personally contact all my acquaintances.”
When a patient is confirmed to have COVID-19, a contact tracer attempts to reach out. The state has its own, separate protocol, through which that contact tracer attempts to reach anyone who might have come in contact with that patient.
The contact tracer offers that patient a code for the app. The patient can then input their information so the app, which was developed by Apple, Google and Microsoft, can alert anyone who has enabled the app and who might have been near the original patient.
What the state could not say is how many people have been notified by the app that they were near someone with COVID-19.
Lora Rae Anderson, a spokeswoman for Gov. Ned Lamont’s office, said that means lives may have been saved.
“If, worst case scenario, those (2,350) codes have only sent a notification to one other person, that’s still over 2,000 people who have had the opportunity to understand they may have been infected, and can take steps to stay home to help ensure others don’t get infected,” she said. “So, a number that may seem small has an exponential effect on thousands and thousands of people, ultimately saving lives.”
But Kingswood said because the app did not work for him as it was designed to work, and therefore he took it upon himself to contact others, precious time was lost.
“Because of this, we believe that my positive case probably yielded more positive cases due to lag time in notification,” he said. “Had the app worked as intended, more cases could have been prevented.”
The app which was provided to the state and to residents at no cost, does not use location services like GPS. If a patient has input the specific code, and then comes within 6 feet for 15 minutes or more of another phone with the app enabled, a Bluetooth connection will alert the user of a possible exposure.
Barbara Zocco believes she caught COVID-19 from her neighbor. The two families had been close, and Zocco, of Newington, said she had spent 45 minutes in a car with her COVID-positive neighbor on Dec 12, days before she tested positive.
She said both had their cellphones on and the app enabled.
“I never got an alert on my iPhone,” she said.
Her husband, Frank Zocco, who later tested positive, was never alerted.
“I just assumed I would get an alert or something over the phone,” he said. “It was enabled. It required a PIN (personal identification number), and no one knew how to get a PIN.”
That question of how to obtain a code was raised by several Connecticut residents. Christin Klouda, a nurse at John B. Sliney Elementary School in Branford, said she knows of no one who has been alerted.
“I am not aware of direct exposure where I should have been contacted, however, I do know many who had signed up and were never notified and others who were positive and were never asked if they had signed up, nor were they given a code,” she said.
For the app to work as designed, a patient needs to be successfuly reached by a contact tracer, given a code, enable the app, input the code and then be near another person with the app enabled.
Those hurdles aside, Anderson said the app is “pretty incredible,” and not the only weapon in the state’s arsenal being used to fight the pandemic.
“While we don’t know the individual circumstances of every single individual who downloaded the app, we know they all had to have been in contact with at least one person — but likely more people — to have been infected with COVID-19,” she said. “While the program isn’t fail-safe, it’s one more step people can take to protect their neighbors and stay informed.”
The app has demonstrably worked. Susan Graham said she received an alert.
“When my partner reported, same residence, I did get an alert,” she said. “The alert arrived within two hours of his recieving test results and reporting his diagnosis to the app using the share button. The test was less than 24 hours before the alert, so the alert results were fast.”
Graham believes at least 10 people may have been notified after her partner was diagnosed.
“I do not know if anyone else was alerted, but if you dig deep in the app it did show 10 other anonymous codes of other phones connected to my alert, so I assumed that number of people did get it,” she said.
A Bridgeport Bluefish game gave the Vieira family a breath of normalcy just months after their daughter was diagnosed with cancer and was actively battling the disease. During the slight reprieve, they decided they wanted others to experience the same relief.
That was the moment when Katrina and Daniel Vieira decided what would soon become LivFree, a nonprofit organization that sponsors fun outings for families impacted with pediatric cancer.
“With all the support that we received, we felt we needed to pay it forward and this is one of the ways that we saw,” Daniel Vieira said.
The Shelton family brought its nonprofit, which has helped over 300 families, to 107 Main Street in New Canaan.
The Vieiras found out that their daughter Lauren, who they call Liv, was diagnosed with Leukemia Feb. 11., 2015, when she was only 16 months old.
“We were devastated, obviously,” Daniel, Lauren’s father, told Hearst Connecticut Media on Monday, Feb.15.
Her chemotherapy treatment spanned two-and-ahalf years.
“Leukemia is interesting because you go into remission fairly fast and the treatment is still long. So she went into remission a little over a month after her diagnosis,” Vieira said. “St. Patrick’s Day was her remission day.”
The six year anniversary of that remission day is coming up next month.
“We were pretty naive to cancer, as we were going through our treatment, we found more and more families and neighbors actually going through it,” Vieira said.
Vieira said that this past year, with many residents quarantining to stop the spread of COVID-19, may provide just a peek into the lives of what families like his have endured and continue to go through.
“The pandemic is actually setting a little light into what pediatric cancer families go through because we quarantine ourselves for months on end because the immune system of our child is so low due to chemotherapy treatments,” he said.
“For a few months we weren’t able to go anywhere except for doctor visits, which were basically it, and maybe a trip to the supermarket,” he said. “That didn’t include kids, it was just mom and dad doing that.”
Lauren was treated by Yale New Haven Hospital. The chemotherapy “made her lethargic, sick, it compromised her immune system” and eventually she lost her hair.
“When her immune system started getting a little bit stronger, we went to a Bridgeport Bluefish game,” her father said “It just meant the world to us. Just to be out and kind of regain a little bit of normalcy for a while. That is where we decided that we wanted to pay it forward. We knew what we were going through and we knew other families were going through the same things.”
Lauren is now 7. She loves to dance, her father said, and she has been doing it for the past three years.
“She has been very involved with some of our fund-raising events, some of the events that we have done with kids. We try to keep her involved because she was young when she went through it,” he said.
The nonprofit has acquired the use of a space on Main Street for free from landlord Robert Iannazzo until it is either rented or sold. They hope to share it with others until the 1,800square-foot space gets a permanent tenant or owner.
Even if a tenant is found, the Vieiras were told there is office space upstairs. Iannazo told the nonprofit that they will be able to use it, according to Vieira.
The nonprofit decided to move into the Main Street building, its first office location, because it wants a bigger platform to spread the word.
“Since we have been there, there has been a lot more interest in the space, which was kind of the idea,” he said. “We made it look nice.”
The Vieiras would like to share the space with local businesses that have been affected by COVID-19 and who need a place to share.
“As long as we have the space we want to utilize (it) with others,” he said.“I really want to get the local community involved.”
He hopes to share it with the likes of artists, yoga enthusiasts and others who “align with what we are doing.”
On St. Patrick’s Day this year, the sixth anniversary of Lauren’s remission, they will celebrate by inviting the public to visit and create greeting cards that will be sent off to hospitals across the state for children battling cancer.
Daniel pointed out that LivFree is still a small operation. “There is no way that we could afford to rent any store fronts, let alone in New Canaan,” he said. He expressed appreciation for the opportunity for the nonprofit to fill the space it is in.
There, they aim to help families with offspring under 26, since people are treated as pediatric patients until that age. Many other organizations don’t support patients over 18, he said.
He hopes to raise $240,000 this year, which he said will directly aid 200 families that have a child with cancer.
“We would like to get the people in New Canaan behind us to help raise that money and people can do individual fundraisers based off our fundraising,” he said. “It is a fun way to get everyone involved.”
After starting as a tiny operation in 2016, the nonprofit has now had the ability to help over 300 families in three years.
The nonprofit asks families what they like to do together. “Whatever they normally like to do, if they like to go to concerts, to amusement parks, ball games,” Vieira said.
He continued, saying that the nonprofit then organizes an itinerary to provide transportation, tickets to the events and then additional funding for food or souvenirs. They also offer overnight hotel stays, if needed. They have also sponsored families to attend a range of activities, including the musical “Hamilton,” a New York Yankees game, a Medieval Times show, local amusement parks, Disney on Ice and a Bruce Springstein concert.
Currently, during COVID, they observe social distancing guidelines by making sure masks are worn and following occupancy requirements.
“We are sending families to outdoor events such as skiing trips and tubing trips,” Vieira said “We don’t just focus on Connecticut. We focus (on) the whole United States.”
He continued, saying that when families have specific requests, there is no destination too far that LivFree will not try to make a reality for a family.
“What we found with Livfree is that we are obviously giving them a sense of normalcy, but we are also giving them something to look forward to, give them a sense of hope and joy. When they are there they forget about cancer for a while. That is one of the most important things,” Vieira said, clearly speaking from experience.
As for one of New Canaan’s newest nonprofit, Vieira said that the town has been very welcoming. “We have met with the town officials” he said.“Our neighbors have been great. They have been extremely welcoming.
“Come say hi,” he said, beckoning New Canaan residents. “See what we are doing. Learn a little bit more about us and potentially get behind us and support us.”